Hello, I am Philippa Taylor and I am Philanthropy co-Chair. 
I have been responsible for managing the relationship between Sue Eddy, Advanced Physiotherapist in Palliative Care/ Specialist MND Respiratory Care, and the CAWC for the last two years.
I have been with the Club for five years and have really enjoyed my stint on the Board. 2020 was the first year of supporting the MND Breathing Support Project. Unfortunately it coincided with the Covid outbreak so we were unable to hold our usual Christmas Bazaar but we still managed to raise over £14,000. Last year we were able to hold our Bazaar and raised a record £25,660! And we have high hopes for this year.
According to Sue, the money we have raised has made a huge difference to the following areas:
Innovation and Quality:
- A unique aspirational project in the South-East and there are only handful of similar in the UK
- Gold Standard specialist care for MND patients and loved ones; to comply with MNDA Best Practice guidelines and government NICE recommendations
- Specialist symptom control and End of Life Care (EOLC)
- Enabling acute admission avoidance
- Supporting preferred place of care
- Establishing specialist professional support and links: within Bucks NHS Healthcare, tertiary hospital services, MND MDTs
- Collaborative working with MNDA
- Expansion of project into supporting BHT Gastro and associated teams re respiratory aspects affecting tube feeding
- Expansion of awareness of respiratory support in other neurological conditions
Patient Experience:
- 1:1 Clinical Specialist respiratory support, treatment and care to MND patients
- Face-to-face and non face-to-face (email/text/written materials etc) support, training and care to MND families and carers
- Prescription and individual ongoing tailoring of respiratory support technology eg: ventilation, cough augmentation etc
- Prescription, training and individual ongoing tailoring of respiratory techniques for treatment and symptom control
- Emotional and psychological support to patients and families through the MND disease journey
The project has impacted many groups of people in Buckinghamshire:
- Patients, loved ones, carers, health care professionals – doctors, physios, nurses, allied health professionals, MND MDTs
- Buckshealthcare NHS Trust management – from Silver command to Chief Executive
- Continuing Healthcare, Care Agencies
- MNDA locally and nationally
- Buckshealthcare NHS Trust acute hospitals
- Tertiary Specialist NHS centres
- Nursing, Care and Supported living homes
- Hospices within and outside of the county
Everyone in the Club is thrilled that our fund raising has much such a difference. It has been a real privilege to be involved in this project.